Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation: a systematic review

Abstract

Purpose: (1) To identify measures used to evaluate the impact of caregiving among caregivers of persons with stroke, spinal cord injury, and amputation; and (2) to systematically evaluate their clinimetric properties reported in validation studies. Materials and methods: Two separate systematic reviews (Embase, PsycINFO, CINAHL, Pubmed/Medline) were conducted. COSMIN guidelines were used to assess clinimetric properties and methodological quality of studies. Results: (1) 154 studies published between 2008 and May 2019 were included, in which 48 measures were used, mostly describing negative impact. Thirty measures were used only once and not further described. (2) In general, structural validity, internal consistency, and hypothesis testing were often investigated. Reliability, cross-cultural and criterion validity to a lesser extent, and scale development and content validity were rarely described. Tests of measurement error and responsiveness were exceptional. Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire. Conclusions: There is a wide variety of impact of caregiving measures. The present study provided a detailed overview of what is known about clinimetric characteristics of 18 different measures repeatedly used in research. The overview provides clinicians a guidance of appropriate measure selection. PROSPERO registration: CRD42018094796 ä IMPLICATIONS FOR REHABILITATIONClinicians should be aware that information about measure development and clinimetric properties for most measures used to assess impact of informal caregiving is incomplete. Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire. This overview of clinimetric properties provides clinicians guidance for selection of an appropriate measure.

Longitudinal changes on the quality of life in caregivers of type 2 diabetes amputee patients

“…Caregiving exposes the informal caregiver to a number of unexpected and stressful situations that require changes in their lifestyles 6,7. Other perspectives point out that not all caregivers develop illnesses or stress exhaustion, suggesting that individuals show variability in responses to changes, that differ from individual to individual and over time 43,44. In this study, caregivers with low levels of stress showed higher levels of mental quality of life over time, thus emphasising the adverse role of continuous stress.…”

A brief psychometric and clinimetric evaluation of self-report burden and mental health measures completed by care partners of people with Parkinson’s-related dementia

“…Notes. a lower score better; b higher score better; * rated by Scholten et al, 2019; †rated by the COSMIN team. Abbreviations: SDstandard deviation; IQRinterquartile range.…”

“…Psychometric properties are most frequently evaluated according to the measure's validity and reliability. To date, a few studies have assessed the psychometric properties of "burden" or "quality of life" measures among care partners of people with neurodegenerative diseases (Page et al, 2017) or stroke (Scholten et al, 2019) using the comprehensive COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines (Mokkink et al, 2018), but no studies have evaluated the psychometric properties among care partners within the spectrum of PD-MCI/PDD/DLB.…”

Safety and Feasibility of Various Functional Electrical Stimulation Cycling Protocols in Individuals With Multiple Sclerosis Who Are Nonambulatory

“…Both the MSIS-29 and FAMS scales are validated in MS and are recommended as outcome measures for MS by the American Physical Therapy Association EDGE MS Task Force 2011. 28 Although the other instruments have not been directly validated within the MS population, they are used within spinal cord injury, 26 , 29 , 30 , 31 brain injury, 32 and stroke populations, 33 as well as in other MS literature. 34 , 35 Given the functional similarities the participants may have shared with these other neurologic populations, the outcome measures were included to allow for easier comparison on effects across other studies in MS and other populations.…”